Welcome to the MDF

The Myotonic Dystrophy Foundation (MDF) is a patient advocacy group dedicated to leading and mobilizing resources toward effective management, treatment, and a cure for myotonic dystrophy, a common form of muscular dystrophy. This inherited disorder can appear at any age and can manifest itself differently in each individual. It affects not only muscle groups but also many other body systems such as the heart, lungs, brain and GI tract, among others. With guidance from our advisors, who together have devoted more than ninety years to the research and treatment of myotonic dystrophy, the MDF offers information to help navigate the disease process.

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Latest News and Events

6/26/2009
Insmed Announces Results of IPLEX(TM) Phase II Trial in Myotonic Dystrophy

-- Insmed to Evaluate Potential Initiation of Phase II Trial for IPLEX(TM) in MMD Patients with Severe Insulin Resistance -

RICHMOND, Va., June 25, 2009 /PRNewswire-FirstCall via COMTEX News Network/ -- Insmed Inc. (Nasdaq: INSM), a biopharmaceutical company, today announced results from its exploratory U.S. Phase II clinical trial evaluating IPLEX(TM) (mecasermin rinfabate) in patients with myotonic muscular dystrophy ("MMD"). The randomized, double-blind, placebo-controlled Phase II trial conducted in 13 centers across the U.S. enrolled 69 patients with MMD, for a six-month period. As this was an exploratory trial, a primary endpoint was not pre-defined. The trial explored measures of endurance, using the six-minute walk test, muscle function and strength, cognitive function, gastrointestinal function, pain, quality of life, insulin sensitivity, lipid metabolism, and safety and tolerability of IPLEX(TM)....more

6/19/2009
Call for 2009 MDF Postdoctoral Fellowship Applications

The Myotonic Dystrophy Foundation (MDF) is pleased to announce the 2nd annual program to support innovative research on myotonic dystrophy. On January 1, 2010, the MDF will award two postdoctoral research fellowships, each providing two years of support at $50,000 per fellowship, per year.

The goals of the MDF are to stimulate research that is closely aligned with its core mission: to lead and mobilize resources toward effective management, treatment and a cure for myotonic dystrophy through education, advocacy, and research....more

6/18/2009
Workshop Lays Foundation for International Patient Registry

On June 12-14, 2009, MDF board members, Lisa Vittek and Don MacKenzie, attended a workshop entitled Patient Registries and Trial Readiness in Myotonic Dystrophy, sponsored by TREAT-NMD, in Naarden, The Netherlands. The twenty-six participants represented eight countries and covered a broad cross-section of the myotonic dystrophy field: scientists, clinicians, patient representatives and industry. The workshop built on the foundations established in two previous ENMC workshops on myotonic dystrophy and the clinical DM working group, and took advantage of the tools developed within the TREAT-NMD network for patient registries and outcome measures.... more

2/18/2009
2009 Myotonic Dystrophy Family Conference - Hold the Date

Mark your calendars!  You are invited to the 9th annual family conference on myotonic dystrophy, October 3-4, 2009 in Manhattan Beach, California.  The sponsoring groups are bringing important research updates, information about diagnosis, treatment, and daily living issues to assist individuals living with myotonic dystrophy, families, healthcare providers and the community.

1/16/2009
MDF Announces Two $100,000 Postdoctoral Fellowship Awards

San Francisco, CA - January 16, 2009: The Myotonic Dystrophy Foundation (MDF) today formally announces the first two $100,000 awards under its postdoctoral fellowship program. The MDF, a patient advocacy organization, created this program to encourage and support postdoctoral researchers and to stimulate basic research in the management, treatment and cure of myotonic dystrophy (DM). This multi-systemic disease is considered the most common form of adult-onset muscular dystrophy, affecting approximately 40,000 Americans and their families.


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 Note: Content on this site was developed through collaborative efforts of internationally respected experts in the field of myotonic dystrophy, and by patients and families whose lives and loved ones have been touched by this disease. All disease content has been read and approved by  members of the MDF Medical and Scientific Advisory Committee. 

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